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- additionally: should research participants get access to incidental findings? \n

- law enforcement would very much like the data\n- if the data is can be used meaningful then health-insurance companies will want access\n- yes, private companies will want access to the data. visa filed a patent on personalized advertising, based on genetic predispositions, last year\n- and then there are the people you maybe want to give access: your doctors, but should they see it all?\n

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- completely open access may suck as we&amp;#x2019;ve seen\n- having no access, as is the standard now definitely sucks\n- so can we find a middle ground?\n

- PHR shouldn&amp;#x2019;t be confused with EHR\n- EHR are mainly used internally at a single(!!!) institution and maybe across institutions to automatically invoice with insurance companies\n

PHRs could be awseome:\n- have a permission system for personal health data, like privacy settings elsewhere on the web\n- provide apis to automatically populate PHR with data from single EHR-sources\n- allow adding self-collected data\n

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- as far as i can see there are no service providers who provide this kind of service\n- bottom picture is a german company which says it would provide such a service: 361 visitors since 2007&amp;#x2026;\n- but maybe this is just an artifact of my bad sampling: how many of you use a PHR?\n

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genomera: small scale studies. users design study collaboratively. makes use of health data which gets specifically collected for this reason and personal genomics-results\nopensnp: our project, collects genotyping-results from users of personal genomics-companies, users provide as much health-related traits as possible to allow GWAS\npersonal genome projects: users publish their full genomes along with their health records\n

- patients upload their health data\n- share and discuss which drugs work for them \n- leads to personalized medicine and even small scale studies:\n- 2008: italian scientist show in small study with low n that lithium carbonate maybe could slow down progress of amytrophic lateral sclerosis\n- users of patientslikeme &amp; company together do a DIY-trial and refute this claim \n

examples where done using the much more inflexible EHR, but could be done using PHR as well. \nproject wunderlich: Carl Wunderlich measured normal body temperature in 1871 with 25k test subjects and basically gave our current definition for fever. by measuring those values in patients post-operation and scraping the data of all EHR-records doctors can get a feeling on how current patients temperature is in comparison\nMRSA: predicting which patients might have an MRSA-infection can save lives, because those can be isolated quickly. By joining the EHR-data of 4 hospitals scientists developed a model which can predict which patients are likely to have an MRSA-infection\n

16.
Difference to Electronic Health Records• EHRs don’t give patients any control over who is allowed to see the data• Are mainly used for communicating between insurance companies and healthcare providers

17.
Things PHRs could offer:• A permission system for the data in the PHR• APIs to connect to Electronic Health Records (EHR) of doctors/insurance companies• Allow patients to add self-collected data (glucose meter,…)

18.
Beneﬁts of PHR-style sharing• Patients retain control of who gets access to data• Sharing can give doctors better anamnesis, allowing better diagnosis & treatment• Hopefully more people are willing to share their data for science™

20.
Problems with PHR• Could lead to excessive demands for patients: • How to decide whom to give which data? • Do I want to keep track of all this data and think about it?

21.
Problems with PHR• Practical issues: • Where to store the data? • Central storage is problematic but not everyone wants to set up his own PHR • Who will be liable in case of data loss/ security breaches?

26.
Patient-groups & Self- help Anyway. In conclusion: My doctor gave me some bad news, I decided I didn’t believe him, I lost a tonne of weight and I feel awesome. Data saved my life. This siloed data approach is only getting worse until someone dies because no one was able to get access to their health information and it was patently, obviously there.

27.
“If biomedical science remains an “us and them”proposition, it bodes well neither for us nor for them. – Misha Angrist• Patients, physicians & scientists can beneﬁt from a policy-change• We need the option to share data with 3rd parties